I am looking for some guidance please. I have now been informed after a lymph node biopsy in March 17 that I have low grade CLL/SLL by my hematologist. It started with an enlarged lymph node to the side of my chest in Feb 17.

I had a biopsy undertaken 21st March 17.

20th April I was informed it was abnormal and was sent for further testing

24th April CT Scan

17th May finally told I had low grade CLL/SLL. ( a long wait to be finally told and confirmed my condition)

Since first noticing the swollen lymph node at the beginning of Feb the CT scan in April showed that I then had swollen lymph nodes above and below the diaphragm.

I had a bone marrow biopsy undertaken on the 9th June, arranged by my hematologist on the 17th May.

I did not receive to much information on my first visit, only to be told my condition and that the final test would be the bone marrow biopsy.

After the biopsy I meet with him again on the 22nd June. I had a concern I had raised previously about the dull ache I have had for a while to the flank of my right side. This is when I was informed about the extent of the swollen lymph nodes in my system. I have given a urine sample although I have no problems with passing urine etc

My confusion is that on both occasions I have never been told, or should I have been

1. What my blood counts are for white and red blood cells other than they are ok

2. The bone marrow biopsy was what to be expected

3. What are my markers "B" "T"

4. I did have to ask what stage was I at and the reply was 3

My lymph nodes are developing in different areas rapidly and the older ones are getting bigger. Another CT scan has been requested for the end of July to assess this. My fatigue is getting worse and my forearms are sore to touch when slightly pressed.

I guess I am looking for some assistance on how I should approach this when I next go back to see him at the start of August with some questions to help me get a better understanding of where I am at with it.

Welcome to our community fortunately CLLcanada is far more knowledgeable than most of us so I will leave interpretation to him.

However as you are in the UK and under the NHS thought I might help by getting you to ring your haematologist, (they have specialist nurses to deal with queries) and ask for a copy of your blood results to be emailed or sent to you.

These will give you information which will be helpful to Chris and others who would try to help you understand more.

You will find a list and the readings and see which are outside of normal range. In the NHS if you don't ask you don't get, they seem to work on the idea that we don't want to understand this disease, we have to show them we do, at least most folk here want to.

Lymphocyte count which we call ALC (absolute lymphocyte count) is a strong indicator for us, and this will be one of the readings.

I will give the nurse a call and ask for them. After CLLCanada replied it does seem to be more SLL. When I meet with him he said that the two were inter changeable and that reference would be made to them both. Confusing to say the least. As regards your comments it does appear that on both occasions when I have seen him I have to ask for information but detail is always lacking, very frustrating. I am the type of person that likes to be informed and thats not to go overboard with information but to just know where I am at so life planning can be considered for, such as work, holidays etc as fatigue is an issue for me at the moment, and if treatment is approaching.

My lymph nodes appear to be growing and more developing very quickly hence the CT scan at the end of July to compare to April.